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Re: Help me Understand

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I am also having blurred vision that comes and goes, I was wondering if it could be the celebrex, When I was on 5mg of pred. My left eye become very blurred, I could not see out of it for about 4-6 weeks then my vision came back. I getted blurred vision alot.

Bobbie

Re: [ ] Help ME understand

Shelby, Unfortunately I have also been recently diagnosed with AIH, and do not know the exact answers regarding the meds, but, I have also had problems regarding blurred vision. I actually started to have problems with my vision in December prior to being diagnosed and it is weird because it comes and goes. I am going to my eye doctor tomorrow because I am experiencing this again, but never associated it with the AIH...Maybe my eyes have been telling me something??? I am also aware of a autoimmune condition called Sjordgen's which causes dry eyes and mucus membranes. The common treatment for this is by using rewetting drops such as artificial tears. You might want to ask your doctor if this is what you have. I am now. I hope I helped...I am still new at this!!! Thanks, Pam

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  • 1 month later...
Guest guest

Check out the website www.aarda.org

It is a very good site on autoimmune diseases!!

Lori C.

[ ] Help ME understand

>

>

>> > I have AIH dx since 10/00 I now have completely

>normal liver levels. I still take 20 mg and 50 mg

>Imuran..plus many others but my question is even if

>the levels are normal is my immune system still

>attacking my liver, causeing damage? If my levels are

>normal then I have stopped the Immune system from

>hurting the liver correct? Also should I ask for

>anyother boispy to see if the liver is futher damaged?

>I also heard that most people with autoimmune diesease

>have several kinds? Like the body attacking another

>organ's or the eyes. Has anyone know about this? One

>more thing..My family dr is sending me an eye dr

>because of the blurry vision. Anyone have this

>problem? Thanks for all the great help.

>

>Shelby

>>

>_________________________________________________________________________

>> > Get Your Private, Free E-mail from MSN Hotmail at

>> http://www.hotmail.com.

>> >

>> >

>> >

>> >

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Guest guest

Shelby,

Unfortunately I have also been recently diagnosed with AIH, and do not know the exact answers regarding the meds, but, I have also had problems regarding blurred vision. I actually started to have problems with my vision in December prior to being diagnosed and it is weird because it comes and goes.

I am going to my eye doctor tomorrow because I am experiencing this again, but never associated it with the AIH...Maybe my eyes have been telling me something??? I am also aware of a autoimmune condition called Sjordgen's which causes dry eyes and mucus membranes. The common treatment for this is by using rewetting drops such as artificial tears. You might want to ask your doctor if this is what you have. I am now.

I hope I helped...I am still new at this!!!

Thanks,

Pam

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Pam, regarding blurred vision -- I can answer only anecdotally, as I don't remember where I've read this, but I believe blurred vision is rather common with Prednisone. However, one must watch for glaucoma and cataracts, which can result from high/prolonged Prednisone use.

My blurred vision improved greatly as the dose decreased.

Harper AIH 5/00

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Pam,

Blurred vision is a relatively common side effect of high doses of pred. But...all but one of my docs, including my ophthalmologist, were not aware of it!! As Harper pointed out, it is important to be checked for glaucoma and cataracts when on pred...again, most docs don't warn you to do this. You also should be checked for diabetes. I developed glaucoma, diabetes, and hypertension from long term, high doses of pred. I suffered needlessly for several years because my PC didn't know to check for those things. Once I was dx'd with them, they were easily controlled, and they have now completely resolved themselves.

I still have some problems with blurred vision when I'm tired, but most of the time it is back to normal. Pred will also cause changes in your eyeglass Rx. I was cautioned NOT to get new glasses because the Rx is too variable while on pred.

HTH

Don

Terradon Unlimited

Creative Embroidery

http://www.TerradonUnlimited.com

"People who ask me how we can still have such a positive attitude after all we’ve been through, have it all wrong…We’ve been able to get through all that we have BECAUSE we have a positive attitude". Don Hanson 8/2000

-----Original Message-----From: flatcat9@... [mailto:flatcat9@...]Sent: Tuesday, March 20, 2001 5:25 PM Subject: Re: [ ] Help ME understandPam, regarding blurred vision -- I can answer only anecdotally, as I don't remember where I've read this, but I believe blurred vision is rather common with Prednisone. However, one must watch for glaucoma and cataracts, which can result from high/prolonged Prednisone use. My blurred vision improved greatly as the dose decreased. Harper AIH 5/00

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Hi Dawn,

If your blood levels are normal, that means that the auto Immune is under control and that it isn't attacking your liver. And the reason why you need to keep taken the med's is cos it keeps the disease at bay.

If your bloods are ok, then there is no need to have a biopsy, you'll probably need one when your levels are high.

As for the blurry vision, this may be a side effect of the pred. If you need any other info please check out the AIh Info Page - http://AutoImmuneHepatitis.HomeStead.com

Take Care

Matt Hastings

Join the AIH mailing list!

And get informed of new developments and up-dates

Just enter your email address below,

then click the 'Join List' button:

===========================================

--- Dawn wrote:

> > > > > I have AIH dx since 10/00 I now have completely

> normal liver levels. I still take 20 mg and 50 mg

> Imuran..plus many others but my question is even if

> the levels are normal is my immune system still

> attacking my liver, causeing damage? If my levels

> are

> normal then I have stopped the Immune system from

> hurting the liver correct? Also should I ask for

> anyother boispy to see if the liver is futher

> damaged?

> I also heard that most people with autoimmune

> diesease

> have several kinds? Like the body attacking another

> organ's or the eyes. Has anyone know about this? > One

> more thing..My family dr is sending me an eye dr

> because of the blurry vision. Anyone have this

> problem? Thanks for all the great help.

> > Shelby

> >

> _________________________________________________________________________

> > > Get Your Private, Free E-mail from MSN Hotmail

> at

> > http://www.hotmail.com.

> > >

> > >

> > >

> > >

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Guest guest

I see alot of e-mails regarding high blood pressure and blurred vision

This is my experience

1. I was suffering from severe head aches

2. My blood pressure was high for the first time in my life

3. I suffered with blurred vision.

Apparently predisone increases the pressure of the fluid that runs up your spine and into your brain (I think it is called ucranial fluid). With this increased pressure it causes the head aches, high blood pressure etc.

My specialist checked the back of my eyes and found the veins where not as they should be, and then sent me to a neuroligist who did a Lumbar Puncture. The pressure was slightly raised but not dangerously high. They prescribed Diamox which I take everyday now and it has made a huge difference for me.

My 2 cents worth

RE: [ ] Help ME understand

Pam,

Blurred vision is a relatively common side effect of high doses of pred. But...all but one of my docs, including my ophthalmologist, were not aware of it!! As Harper pointed out, it is important to be checked for glaucoma and cataracts when on pred...again, most docs don't warn you to do this. You also should be checked for diabetes. I developed glaucoma, diabetes, and hypertension from long term, high doses of pred. I suffered needlessly for several years because my PC didn't know to check for those things. Once I was dx'd with them, they were easily controlled, and they have now completely resolved themselves.

I still have some problems with blurred vision when I'm tired, but most of the time it is back to normal. Pred will also cause changes in your eyeglass Rx. I was cautioned NOT to get new glasses because the Rx is too variable while on pred.

HTH

Don

Terradon Unlimited

Creative Embroidery

http://www.TerradonUnlimited.com

"People who ask me how we can still have such a positive attitude after all we’ve been through, have it all wrong…We’ve been able to get through all that we have BECAUSE we have a positive attitude". Don Hanson 8/2000

-----Original Message-----From: flatcat9@... [mailto:flatcat9@...]Sent: Tuesday, March 20, 2001 5:25 PM Subject: Re: [ ] Help ME understandPam, regarding blurred vision -- I can answer only anecdotally, as I don't remember where I've read this, but I believe blurred vision is rather common with Prednisone. However, one must watch for glaucoma and cataracts, which can result from high/prolonged Prednisone use. My blurred vision improved greatly as the dose decreased. Harper AIH 5/00

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  • 9 months later...

Before I became very sick with Lyme I had it together enough to be all

things to all people. Now those same people expect me to be the same person

because I " don't look sick " . I can't even help myself and I am totally

unable to help others. I have pushed most of my friends and relatives away

because I can't cope with their requirements. They need me to be pleasant,

available, energetic, appreciative and, in general, " normal " . I'm not normal

and I don't want to have to deal with normals' demands. Maybe that's how she

feels.

Rita

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Thanks Rita

I am doing my best to be there for her. Thanks for the reply. How do wish your

friends and relatives would act towards you?

-Ant

Re: [ ] Help Me Understand

Before I became very sick with Lyme I had it together enough to be all

things to all people. Now those same people expect me to be the same person

because I " don't look sick " . I can't even help myself and I am totally

unable to help others. I have pushed most of my friends and relatives away

because I can't cope with their requirements. They need me to be pleasant,

available, energetic, appreciative and, in general, " normal " . I'm not normal

and I don't want to have to deal with normals' demands. Maybe that's how she

feels.

Rita

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I wish my friends would understand that my nap is more important than life &

I can't clean the house and sleep at the same time. It's a pain in the ass

to go somewhere because by the time I'm there I need my nap. I just want to

go to bed. I don't want to have to do what normals do. It would be nice if

someone would want to do something for me without getting anything in

return. It would be nice to have emotional support.

Rita

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Hi Ant,

I'm SO SORRY about your wife leaving. If you've been reading on here

you know I can totally relate to your pain. Only the circumstances

are reversed with you being the well one and her being the sick one.

You asked what people want from friends and family. Number one is

absolutely emotional support. Believe that we are sick with a

physical illness. Believe that we have Lyme if we have Lyme. Defend

us to doctors, etc. (directly to them when appropriate and certainly

at all times privately take our side never the side of an illiterate

doctor.). Give us plenty of understanding and sympathy. Don't

expect us to be happy or pleasant or in a good mood. Don't be p'd

off at us for being unable to do things regular people can do--that

includes work, household tasks, fun activities, etc. We are

suffering intensely that we can't do these things--no one would be

angry or nasty or blame someone with flu for being " disabled " for

five days--don't know how anyone could even consider taking that

attitude towards someone who been sick and disabled for YEARS ON

END. Help us with practical stuff without making us feel guilty.

REASSURE US OF YOUR LOVE AND COMMITTMENT AND DEVOTION TO US AND THAT

YOU WILL ALWAYS BE THERE FOR AND WITH US EVEN IF WE NEVER GET WELL.

Learn about Lyme so you'll be LL as much as possible and therefore

can be more supportive about various Lyme issues public and private.

Good luck Ant. Be very loving to her and never stop loving her.

Never give up on the one you love and it's obvious you do love her.

I'll be thinking of you.

Madeleine

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wonderful suggestions connie. we with lyme are just not ourselves at all. we

dont really have the chance to know what we truly want because everything

feels like a hurdle. sometimes, just a small gesture of kindness and support

makes all the difference in the world. pj

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Hi Madeleine-

Thanks for replying. I am trying to be there for her. She says she's getting

better and maybe wants to go to work. I think she feels better than she has in a

long time and the stress of being a " wife " is lifted making her feel even

better. She says she loves me and likes me, but she's not sure if she loves me

enough to be my wife. She's breaking my heart. I have been there for her

throughout her illness (years) and now she decides she's feeling better, doesn't

want a relationship, and wants to live by herself with her son. I am so confused

by this. She can't explain her feelings and says she needs time to think things

out. I have told her I will wait for her, but its tearing me apart inside. I

think she thinks this is better for me!

All I can do is give her space and pray for her.

-Ant

[ ] Re: Help Me Understand

Hi Ant,

I'm SO SORRY about your wife leaving. If you've been reading on here

you know I can totally relate to your pain. Only the circumstances

are reversed with you being the well one and her being the sick one.

You asked what people want from friends and family. Number one is

absolutely emotional support. Believe that we are sick with a

physical illness. Believe that we have Lyme if we have Lyme. Defend

us to doctors, etc. (directly to them when appropriate and certainly

at all times privately take our side never the side of an illiterate

doctor.). Give us plenty of understanding and sympathy. Don't

expect us to be happy or pleasant or in a good mood. Don't be p'd

off at us for being unable to do things regular people can do--that

includes work, household tasks, fun activities, etc. We are

suffering intensely that we can't do these things--no one would be

angry or nasty or blame someone with flu for being " disabled " for

five days--don't know how anyone could even consider taking that

attitude towards someone who been sick and disabled for YEARS ON

END. Help us with practical stuff without making us feel guilty.

REASSURE US OF YOUR LOVE AND COMMITTMENT AND DEVOTION TO US AND THAT

YOU WILL ALWAYS BE THERE FOR AND WITH US EVEN IF WE NEVER GET WELL.

Learn about Lyme so you'll be LL as much as possible and therefore

can be more supportive about various Lyme issues public and private.

Good luck Ant. Be very loving to her and never stop loving her.

Never give up on the one you love and it's obvious you do love her.

I'll be thinking of you.

Madeleine

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Madeleine Writes:

>>>>Give us plenty of understanding and sympathy. Don't expect us to be

happy or pleasant or in a good mood. Don't be p'd>>>>>>

We aren't happy because we feel so sick, but I don't ever remember being

unpleasant because of a bad mood. Yes we are in pain, but there are a lot

of people in the world in pain..........not just lyme people..........many

in greater pain than our own.......some less than our pain. Most people I

have encountered, are not really in bad moods, nor are they unpleasant, or

nasty in anyway. They are usually subdued, with little or no enthusiasm,

little energy, zombie like in their fog lyme state, and most of the time

feel guilty for not being able to be happy for their loved ones.......sounds

like your wife feels you deserve better, probably would be good if the two

of you seek counseling.......it might bring some things out into the

open.......that haven't been discussed. It sounds like your wife loves you

too much to let you lose " living a normal life " and suffer with her. Call

her up, surprise her with dinner. Romance her in a way, that will make her

life easier, surprise her by bringing over dinner, higher someone to clean

her house every other week, or little things mean the most.........and she

may need medication, depressed people push away everyone, including the ones

they love.

Don't give up on your wife..........you fell in love, and

married...........that is still there, only masked by sickness and

depression.

Conniek nwnj

Leave no stone unturned.......and ask questions!

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Ant, I am so very sorry for your family probs, truly am. I know that this

wont help but sometimes people do need space, ya know? My hubby works for

the railroad so is gone alot, which I think is helping us. He doesnt see me

hurting all the time and I can 'fake' it when I get bad to help ease his

burden some. Good luck hon, we're here for ya, /The Chocolate woman

*-)

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In a message dated 01/07/2002 6:49:08 PM Eastern Standard Time,

AtTheLake@... writes:

> . Now those same people expect me to be the same person

> because I " don't look sick " . I can't even help myself and I am totally

> unable to help others. I have pushed most of my friends and relatives away

> because I can't cope with their requirements. They need me to be pleasant,

> available, energetic, appreciative and, in general, " normal " . I'm not

> normal

> and I don't want to have to deal with normals' demands. Maybe that's how

> she

> feels.

>

I feel like this many times too {{Rita}}. Everyone tells me to get out of bed

you're fine, you spend too much time inside and in bed, you need to get out.

f e

d

e Jody f

f Cleaning your house while your kids are still growing

is like clearing the drivewaye

e before it has stopped snowing f

<A HREF= " http://hometown.aol.com/tarabencaitysmom/index.html " >Jeff & Jody's

Family</A> <A

HREF= " http://www.picturetrail.com/gallery/view?username=tarabencaitysmom " >Jody's

Photo Albums</A>

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Thanks -

I did get some of your chocolate for a Christmas present. They are so good!

I travel alot with my job also. I just couldn't tell when she was ill and when

she was annoyed with me when I was home. To me she was just always feeling bad.

I saw her this morning and she looked like she was feeling well (and she looked

more beautiful than ever). I think the " space " is relieving some stress on her.

I have been praying for the day when she could feel alive again. I truly hope

she finds happiness, even if it isn't with me.

Like Forest Gump says...Life is like a box of chocolates...you never know what

you're gonna get....

Thanks again. I appreciate the groups insight and advice. I also apologize to

those that don't want to read about relationship problems.

-Ant

Re: [ ] Re: Help Me Understand

Ant, I am so very sorry for your family probs, truly am. I know that this

wont help but sometimes people do need space, ya know? My hubby works for

the railroad so is gone alot, which I think is helping us. He doesnt see me

hurting all the time and I can 'fake' it when I get bad to help ease his

burden some. Good luck hon, we're here for ya, /The Chocolate woman

*-)

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  • 3 months later...
Guest guest

" We started the Month of march planning our wedding for May and then

just over the weekend we went from that to D having lung cancer and

needing surgery and the beginning of tests. 3weeks later we are now

faced with HepC in our life to. "

Looks like you've got a plate full. As the spouse of a hep patient I

thought I'd give you my two cents.

If you love D hang in there. It's all worth it. This isn't

necessarily a death sentence. Right now D needs you more than ever,

as I'm sure you need D. You can't go back and change the past.

Though I'm not an expert on the subject, I'm wondering if D's

treatment might be different. The treatment given to Hep C patients

is actually a low dose of chemo - that's why all the side effects

(hair loss, upset stomach, etc). I've been married to my husband for

20 years and still do not have Hep C, nor do my children. We're

taking it one day at a time and have 2 more months till we find out if

it's working or not.

So hang in there and think positive.

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Guest guest

" We started the Month of march planning our wedding for May and then

just over the weekend we went from that to D having lung cancer and

needing surgery and the beginning of tests. 3weeks later we are now

faced with HepC in our life to. "

Looks like you've got a plate full. As the spouse of a hep patient I

thought I'd give you my two cents.

If you love D hang in there. It's all worth it. This isn't

necessarily a death sentence. Right now D needs you more than ever,

as I'm sure you need D. You can't go back and change the past.

Though I'm not an expert on the subject, I'm wondering if D's

treatment might be different. The treatment given to Hep C patients

is actually a low dose of chemo - that's why all the side effects

(hair loss, upset stomach, etc). I've been married to my husband for

20 years and still do not have Hep C, nor do my children. We're

taking it one day at a time and have 2 more months till we find out if

it's working or not.

So hang in there and think positive.

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Guest guest

--Thank for the answer. I still have many questions and some I don't

know how to ask. I have no intention of leaving D over this and feel

its just a test of our love for each other right now. I'm still

planning the wedding just at a slower rate until we get thru lung

surgery in 12 days. Next we'll deal with the hep C and see where

that takes us. The funny thing about all this is that D has stated

that he feels healthier than ever and can't believe this whole mess

is happening now, neither can I. How do we handle being a couple if

one has Hep C and other doesn't and the Doctors aren't say much yet.

- In Hepatitis C@y..., oceanisus <no_reply@y...> wrote:

> " We started the Month of march planning our wedding for May and

then

> just over the weekend we went from that to D having lung cancer and

> needing surgery and the beginning of tests. 3weeks later we are

now

> faced with HepC in our life to. "

>

> Looks like you've got a plate full. As the spouse of a hep patient

I

> thought I'd give you my two cents.

> If you love D hang in there. It's all worth it. This isn't

> necessarily a death sentence. Right now D needs you more than

ever,

> as I'm sure you need D. You can't go back and change the past.

> Though I'm not an expert on the subject, I'm wondering if D's

> treatment might be different. The treatment given to Hep C

patients

> is actually a low dose of chemo - that's why all the side effects

> (hair loss, upset stomach, etc). I've been married to my husband

for

> 20 years and still do not have Hep C, nor do my children. We're

> taking it one day at a time and have 2 more months till we find out

if

> it's working or not.

> So hang in there and think positive.

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Guest guest

--Thank for the answer. I still have many questions and some I don't

know how to ask. I have no intention of leaving D over this and feel

its just a test of our love for each other right now. I'm still

planning the wedding just at a slower rate until we get thru lung

surgery in 12 days. Next we'll deal with the hep C and see where

that takes us. The funny thing about all this is that D has stated

that he feels healthier than ever and can't believe this whole mess

is happening now, neither can I. How do we handle being a couple if

one has Hep C and other doesn't and the Doctors aren't say much yet.

- In Hepatitis C@y..., oceanisus <no_reply@y...> wrote:

> " We started the Month of march planning our wedding for May and

then

> just over the weekend we went from that to D having lung cancer and

> needing surgery and the beginning of tests. 3weeks later we are

now

> faced with HepC in our life to. "

>

> Looks like you've got a plate full. As the spouse of a hep patient

I

> thought I'd give you my two cents.

> If you love D hang in there. It's all worth it. This isn't

> necessarily a death sentence. Right now D needs you more than

ever,

> as I'm sure you need D. You can't go back and change the past.

> Though I'm not an expert on the subject, I'm wondering if D's

> treatment might be different. The treatment given to Hep C

patients

> is actually a low dose of chemo - that's why all the side effects

> (hair loss, upset stomach, etc). I've been married to my husband

for

> 20 years and still do not have Hep C, nor do my children. We're

> taking it one day at a time and have 2 more months till we find out

if

> it's working or not.

> So hang in there and think positive.

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Guest guest

God bless you two. My hubby and I both has Hep c I am treating, he

refuses to treat. ( don't blame him abit.) I think that many doctors

really don't know what to say. Treatment is rough on both partners.

Find out how much damage and to what extent there is in his liver is

a good first step.

Enjoy the wedding planning and event.

Hep C is slow so it generally isn't something that you need to rush

out and treat. ( now that is my opinion)

Just take precausions that we should do anyway. Like not sharing

toothbrushes, razors ie. Good hygene and hand washing is most

important. and try to eat properly.

Avoid to much tylenol.

God bless you both again

> > " We started the Month of march planning our wedding for May and

> then

> > just over the weekend we went from that to D having lung cancer

and

> > needing surgery and the beginning of tests. 3weeks later we are

> now

> > faced with HepC in our life to. "

> >

> > Looks like you've got a plate full. As the spouse of a hep

patient

> I

> > thought I'd give you my two cents.

> > If you love D hang in there. It's all worth it. This isn't

> > necessarily a death sentence. Right now D needs you more than

> ever,

> > as I'm sure you need D. You can't go back and change the past.

> > Though I'm not an expert on the subject, I'm wondering if D's

> > treatment might be different. The treatment given to Hep C

> patients

> > is actually a low dose of chemo - that's why all the side effects

> > (hair loss, upset stomach, etc). I've been married to my husband

> for

> > 20 years and still do not have Hep C, nor do my children. We're

> > taking it one day at a time and have 2 more months till we find

out

> if

> > it's working or not.

> > So hang in there and think positive.

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Guest guest

God bless you two. My hubby and I both has Hep c I am treating, he

refuses to treat. ( don't blame him abit.) I think that many doctors

really don't know what to say. Treatment is rough on both partners.

Find out how much damage and to what extent there is in his liver is

a good first step.

Enjoy the wedding planning and event.

Hep C is slow so it generally isn't something that you need to rush

out and treat. ( now that is my opinion)

Just take precausions that we should do anyway. Like not sharing

toothbrushes, razors ie. Good hygene and hand washing is most

important. and try to eat properly.

Avoid to much tylenol.

God bless you both again

> > " We started the Month of march planning our wedding for May and

> then

> > just over the weekend we went from that to D having lung cancer

and

> > needing surgery and the beginning of tests. 3weeks later we are

> now

> > faced with HepC in our life to. "

> >

> > Looks like you've got a plate full. As the spouse of a hep

patient

> I

> > thought I'd give you my two cents.

> > If you love D hang in there. It's all worth it. This isn't

> > necessarily a death sentence. Right now D needs you more than

> ever,

> > as I'm sure you need D. You can't go back and change the past.

> > Though I'm not an expert on the subject, I'm wondering if D's

> > treatment might be different. The treatment given to Hep C

> patients

> > is actually a low dose of chemo - that's why all the side effects

> > (hair loss, upset stomach, etc). I've been married to my husband

> for

> > 20 years and still do not have Hep C, nor do my children. We're

> > taking it one day at a time and have 2 more months till we find

out

> if

> > it's working or not.

> > So hang in there and think positive.

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